Sunday 26th June 2022

Living With Cancer & Uncertainty. 4/51. #LifeThisWeek. 5/2022.

Living With Cancer & Uncertainty. 4/51. #LifeThisWeek. 5/2022.

I go to BIG places to help get me out of my small place: in my head!

  • In the week leading up to World Cancer Day, I wanted to share facts from the website, and here it is….and to also add my update at the end of the post.
  • Each of us will be touched by cancer in some way: directly via a diagnosis, being a partner or in some way related to someone with cancer and maybe knowing of friends and acquaintances who have had cancer.
  • Sadly as we all know, not all of those people survive a cancer diagnosis and I want to say how sorry I am about that. I also know some people reading here have cancer and I want to wish them well.

World Cancer Day 2022.

 

Head and Neck Cancer.

Head and Neck Cancer colours are maroon & white

 
Today I want to share this:
 
1. I am now in my 5th year of recovery from Head and Neck Cancer (HNC as we call it)  and much is not the same for me now BUT I am alive and well
 
2. I do what I can, within my skills list and experiences, to share about HNC various symptoms which can be seen as often nothing to do with a cancer. My own diagnosis took over a year.
 
3. Every day people I know of or through others know about, are dying from head and neck cancer. This is the sad news. Always.
 
4. I can only share my condolences to their families and friends and can continue to do what I do, with a sombre heart.
 
5. There are friends here who are suffering….from the long-lasting and ill-effects of this brutal Head and Neck Cancer and yet, they live.
 
6. They, like me, “Live With HNC and its effects”. I for one am grateful for that and that they are here too.
 
7. I know of people too, who are not doing well at all now, and are unlikely to improve, and in fact, will succumb when the HNC or another type of cancer has destroyed the life within.
 
8. I reflect on this often and I am so, so sorry. And sad.
 
9. I am aware that there are friends who have had HNC who do not share their updates and who prefer, if they can, not to be identified “with” their head and neck cancer. I respect that so much.
 
10. I will continue, as I do today, to honour all who have had the personal challenge of head and neck cancer, and those whose loved ones have died because of it.
 
And please do not ignore what might be signs of cancer. Covid has impacted people getting seen by doctors and going to hospitals because there is a myth they won’t be seen or it is not safe. Sadly, that has been creating a cohort of cancer patients now being seen much later and effective treatment may be hampered.
About Uncertainty.
  • It’s everywhere we look and see today.
  • Not only about health and cancer but more so about what the Covid Pandemic is doing to us all.
  • We have been in various levels of uncertainty for almost 2 full years now.
  • I know I have started to feel somewhat more anxious playing the wait and see of maybe getting a covid diagnosis. 10 PCRs & 2 RATS in 2 years: No.
  • I thought I would be better equipped to manage my somewhat anxious self as I have needed to garner my strength and capacity to deal with around 3 years of pretty serious and life-changing times.
  • First a cancer diagnosis, then hearing about my surgeries and having them…and then SO much time for more surgeries and recoveries and check ups and treatments….and that finished in some ways because of Covid, so I only had 2 in-person cancer checks in 2021.
  • I have no signs of cancer. I am grateful
  • But then I have some of my way back anxious feelings creeping back…connected to health for other reasons, whether we get to keep renting this house (have you seen how much real estate has risen…in our street alone, over 45% in 12 months) if the rent is too high….and more…and I don’t like it!
What am I doing…and being?
  • I practise Calm meditation morning and night.
  • I get out into nature every day.
  • I have disengaged with twitter for now. I was getting very angry about how our leaders were/are behaving.
  • I talk with B about it
  • I tell myself “this too shall pass” and “I have been like this before and it ends” and I believe me
  • I am listening to helpful books I have downloaded and am enjoying learning some more about ageing….
  • I am seeing my GP again soon, to hear how my recent test results were and “what the heck” has been wrong with me since late Nov. (Dear readers, I think it was me overdoing the doing and then getting a bit sick and then more worn out and I did not recognise it till a few weeks back….)
  • I am reducing my exposure to crowded places like a supermarket and using the NSW Service Check In App
  • I know it will eventually be something I can live with more easily
  • I have found some of my better health & mindfulness  resources from years ago and giving them another listen and read.
  • And colouring my world of course..helps me heal and stay well.
It also helped HUGELY last week to have a treat day of almost all the family visit us. Some we had not seen up here for over a year. Filled our hearts.
  • May you all be as well as you can be in heart, spirt and mind today, and onward.
  • I send my best wishes to you and yours who have been, and are affected  by cancer.
Denyse.

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Changing Me. 19/2019.

Changing Me. 19/2019

Changing me is I now realise ON-GOING!

It has been many years as I have mentioned in previous posts of living overweight and obese that has given me a skewed view of my image. My most recent post is here.

I am doing what I can now, to approach my thinking with:

  • kindness
  • self-care
  • words of encouragement

and seeing that thoughts are not always true.

I already use the Calm app for meditation each day, and often in taking a time-out will be mindful in whichever are my circumstances as I learn to be present and here….in the now.

Eating mindfully (and planning to eat) is helping me in these ways:

  • I do not follow those rules of ‘only concentrating on one food and mouthful at a time’ mindfully in eating.
  • I do now examine and observe my inner feelings (physical and emotionally) about the why and when of eating.
  • I am getting so much better at this!
  • I am also recording what I eat via a free app and it is Australian foods-based and gives me an idea of how well I am doing.
  • As a no-diet person, this feels good to have some control but also to eat within the generous range I have allowed myself.
  • I am using my fitbit to slowly up my steps each week by 500 steps  from a base of 6000.

On Tuesday 19 February 2019 I had my 3 month cancer check, and my Professor Jonathan Clark was delighted to see no reason for further surgery (yay for now) and when I mentioned my weight gain since ‘teeth’ he said “that’s good.” Oh, he means that is healthy and I am doing well! Of course now I get it…but as I chatted with his clinical nurse consultant who is just the best for me, she and I agreed that moving more is a good idea!!

 

On 23 February 2019 I posted this image and the words on Instagram.

One Year On.

As a person who was overweight to obese for decades, losing weight pre-cancer diagnosis & post cancer surgeries has been a mental issue.

I realise to others I look well, healthier and ok now.

I acknowledge I was 5kg+ lighter a year ago & pretty darned miserable at times because of eating restrictions due to 4 cancer surgeries & reconstruction inside my mouth.

I do think I did the best I could at the time to nourish myself but acknowledge how much I missed:

*chewing

*crunching

*biting

*savouring

FOOD from a variety of offerings! My shopping for over 14 months took me away from foods I missed biting, chewing, crunching & savouring.

From 21 Aug 2018 this changed. My upper prosthesis was fitted. It was novel to try the foods I’d missed: cheese on a cracker took minutes to eat. Then over time as my mouth & my brain handled the different foods better it was/is great.

Then, about a month or so ago the creeping up of my weight on the scales (once a month weigh in- years of measuring my worth via the scales is a horrid memory) was noted & I “have” to admit I knew what to do IF I still wanted to:

*like wearing my new clothes

*feel comfortable in my body

*enjoy all aspects & variations of foods I could now choose from

It was time to choose a better balance between foods that nourish & are enjoyable & to increase my movement each day.

This mindful eating plan I’ve made up is working for me.

I am now understanding the WHY of how I used food to deal with emotions & that it does not work like that MAKES so much sense!

Keeping myself active by changing my approach to movement. Upping the steps weekly by 500 a day,  starting at 6000 a day.

Most of all I want to add is how grateful I am to be well after nearly 2 years of oral cancer & that I can continue to learn best how to care for myself emotionally & physically!

Changing the voice in my head…. the inner critic…to low volume or mute whenever she begins to shout!

So have you ever taken steps to change you?

Denyse.

Joining with Min for Zen Tips Tuesday here.

Finding a place with Sue and Leanne here in MidLife Share The Love on Wednesday

and, of course, Lovin’ Life with Leanne here each Thursday.

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Eating With No Teeth*- Head & Neck Cancer. 17/2019.

Eating With No Teeth* – Head & Neck Cancer. 17/2019.

Update on Being a Head & Neck Cancer Patient. 

Oh I “did” have 8 teeth*…in my lower jaw and they remain. Yay for “some” teeth.

In the past year I know how far I have come as far as eating is concerned since my Head and Neck Cancer diagnosis in May 2017. I have been delighted to have an upper prosthesis of teeth now screwed into my abutments in my jaw. They were attached on 21 August 2018.

The Before and After of “Teeth Day” 21 Aug

OH HAPPY day….it really was but I had many eating lessons to come and I still do. More on that in a future post.

Day 1 post surgery to around Day 8.

Back to those months when I was post-first surgery. I recall being fearful of what it would be like not to eat but with a fluid drip and then a gradually introduced naso-gastric feeding tube my body was cared for. My mind did accept what it was until around Day 7 post-surgery when I recall feeling hangry. You know: angry because of hunger. So, when I was given the chance to see if my mouth (and brain!) remembered how to sip water and my throat allowed it to swallow…remember all of the inside of my mouth had been affected in some or many ways but my reconstructive surgery…it was heaven!

This:

Day 9 and Day 10. Discharge on Day 10.

This:

First meal in hospital. Then next 3 times I did not enjoy it much.

Early days at home. First Weeks.

I have IBS and with an empty gut receiving food for the first time in a long time, as well as the prescription of a far too strong for me anti-biotic on the morning I left hospital as a “your drain in your leg looks infected” ….my gut (and I) were just not happy in that first 10 days home even though I was starving. Poor husband did his best to please, and I also tried to be helpful but it really was a challenging time.

When my GP unravelled the cause of the massive diarrhoea episodes I had, he told me to forget any (hospital dietitian suggestions of ) liquid meal replacements, protein additives and eat what I could and felt like. The relief was amazing and coming off the giant dose of anti-biotics helped as the leg looked fine. The toast in these pics really wasn’t consumed but I liked ‘tasting what was on it. Avocado and soup were good friends, and also peanut butter eaten off the spoon. Jelly and icecream have never been a favourite but they provided so much mouth comfort with their smooth coolness.

The next weeks turned into months.

By the time the second week at home was over, despite my sore leg, I was able to do some meal prep. It frustrated me that I depended on my husband’s kindness and labour as I wanted to contribute. Eventually I worked out how I could have some say and also make some meals that would work for me. We mostly ate separate meals anyway because of his health. I also had many types of soup: homemade vegetable soup, pumpkin soup & tomato soup. For someone who was never a cereal girl at breakfast, weetbix and milk were/are my go-to foods!

Why this post about eating as a Head and Neck cancer patient?

I have written about my management of eating in two posts.

Part one is here, part two here.

Why I decided to do this more detailed one is for any  newly-diagnosed head and neck cancer patients who come here to read and view. Sometimes it is the head and neck cancer patient’s carer who needs some ideas. It can be very overwhelming and confronting when something as normal as eating & drinking (let alone speaking and swallowing) is changed dramatically via a cancer diagnosis.

I was fortunate in many ways. I had a limited time with only a naso-gastric tube before returning to eating and drinking as well as I could.

I know some people have long-term eating and drinking challenges following different Head and Neck cancers and procedures.

My health is good. I am looking to the 2 years marking the first cancer surgery in July 2017. What I know is that I may have to modify my eating again over time if more surgery is prescribed inside my mouth to enlarge the space between the lip and ‘teeth’ on upper prosthesis.

How To Seek More Information On-Line.

In my case, the words and written information from my Chris O’Brien Lifehouse dietitian helped me. I learned about the important of protein and fat in a post surgery diet. I also learned to value-add and I am grateful for that. For information on Chris O’Brien Lifehouse, go here.

Each head and neck cancer patient needs to be guided by their professional team.

The site and organisation called Beyond Five has a comprehensive page of information and this takes you to pages on nutrition with links here.

Beyond Five is the organisation I am working for as an Ambassador in 2019 to raise awareness of Head & Neck Cancer.

The stories of others with Head & Neck cancers are shared for here all to read:

 

This is a link to finding avenues of supportive care on the Beyond Five website.

There are support groups to help you as well. Here is the link, again from Beyond Five, to those in Australia and New Zealand. Correct at the time of posting.

Recently it was World Cancer Day and I submitted my story which was published here.

I AM a head & neck cancer patient

I WILL share for others to be aware

 

This post is going live on the morning I will be driving 2 hours to Chris O’Brien Lifehouse, donating some craft supplies to their Arterie program, having the first meeting with Beyond Five for 2019 and then visiting my Head & Neck surgeon, Professor Jonathan Clark and Clinical Nurse Consultant & Surgical Assistant Sr Cate Froggatt. After my cancer check, I will be better informed about ‘what’s next’ and then drive myself back home!

  • UPDATE: the meeting went well and provided much for me to discover as I move into my role as Ambassador to Beyond Five, and then my cancer check went well too. My professional team told me the inside of my mouth looked better when they last saw me early January and no surgery is required (I always add, at this stage…as my journey has had some detours!) and I will be back for a 3 month cancer check in mid May. That will be 2 years since diagnosis!

Wishing you well, from me. a head and neck cancer patient, to patients, carers, family and friends.

Denyse.

Joining with Sue and Leanne here for Midlife Share the Love link up on Wednesday

On Thursday linking up with Leanne for Lovin’ Life here.

 

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I Am Grateful Today. Cancer Surgery #1.Part 3. 2017.98.

I Am Grateful Today. Cancer Surgery #1. Part 3. 2017.98.

For those of you who have been following my story of having cancer, the surgery for cancer and the recovery, this post is bringing you up to date with my first month at home.

Going home! Are there any better words when you have been in hospital? I do not think so! I spent the whole of the journey back home being very grateful for my discharge from Chris O’Brien Lifehouse and being entrusted into my loving husband’s care. I think I talked all the way home as it had been some time (ok, 10 days!) since I had been outside the walls of the hospital.

The following photos will tell part of my story of gratitude.

However, throughout all of this ‘cancer journey’ the one person I am most grateful to is my husband:

the yin to my yang, the calm to my panic, the voice of reason to the voice of worry, the patient man for the patient who is often less than patient….I dedicate this post to him.

And even though he dislikes the attention, I have told him often enough that without his care, love, compassion, practical skills and commonsense my time becoming accustomed to have cancer and facing the serious surgery would have been much, much harder.

I am very grateful to B:

 

Here I am …within one month even I can see the differences and I know I feel different inside and much more ‘like me’ so I am incredibly grateful for healing time, a good body, great medical and surgical support and my outlook!

Taken on 12 August 2017, 4 weeks after my arrival home from hospital.

I am most grateful for YOUR support and care via your comments, your Facebook updates and those on Instagram. Thank you all!

Denyse.

Joining with Kylie Purtell for I Blog on Tuesdays and Leanne for her link up called Lovin Life on Thursdays.

The gratitude post in photos!

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